Autistic students are being sent out of state

May-Lynn Andresen for more than a year drove eight to 12 hours round-trip to visit her autistic son at his Connecticut school and bring him home for the weekend. Her husband then drove their son back to the school on Sunday.

In addition to the challenges of autism, they handled the difficulties of a long commute.

“It was really hard on the family,” said Andresen whose son has since moved to another school that is closer, but also is out of state. “The school was good. It helped him a lot.”

Hundreds of autistic students are being sent out of state and sometimes as far as the Midwest because closer to home there’s a shortage of facilities to teach them.

“There’s no reason why New York state can’t educate our own kids,” said Susan Moran, assistant executive director of SCO Family Services, which operates a residential school for autistic children in Seacliff. “They’re being sent to Pennsylvania, Massachusetts, Connecticut and some farther away. Some to Ohio.”

Distance breeds difficulties, according to many autism advocates and attorneys representing families of children with autism.

“Because of the expense and the distance, we can’t regulate and monitor children out of state,” said Kenneth Mollins, a lawyer in Melville who has represented families of children with special needs.

An explosion in demand

Part of the problem is that the number of students ages four to 21 diagnosed with autism in New York increased from 3,416 in 1996 to 15,471 in 2006. Supply just hasn’t kept up with demand for this population.

“There’s a shortage of educational programs across the state and on Long Island,” Andresen said. “I think this is a national issue. Connecticut has more residential programs than we have. But the state is making an effort to change that.”

New York in 2005 formed an out-of-state placement committee to provide more services in state after finding that nearly 1,300 students with disabilities were shipped elsewhere.

“You lose something when the children are moved from their own community, families and circles of support,” Moran said. “It’s more than just going away to a school.”

Distance prompted worries that abuse is more likely and supervision more problematic. Incidents only sharpened concerns. Jonathan Carey, an autistic child sent out of state, died in 2006 at age 13 after being restrained in a van by staff at the Anderson School in Duchess County.

“When you have kids being placed at out of state facilities, where is the oversight?” asked Assemblyman Harvey Weisenberg, D-Long Beach. “Who takes responsibility? Who follows up on how our children, whom this state is paying for, are being cared for?”

New York is now embarking on a massive effort to bring these children home after finding the will – and at least so far, the wallet – is there.

Bringing the children home

The state has been making progress, although the problem isn’t solved. New York from 2005 to 2008 has moved from an almost even split between in-state and out-of-state placements to about three quarters in state,” said Rebecca Cort, New York state deputy commissioner of education.

New York, Cort said, also is doing more to inspect and monitor out-of-state facilities than just a few years ago. “It depends on the facility, the number of students there, whether previous issues have been identified or resolved,” Cort said.

While the in-state site shortage is far from solved, new facilities are in the works for Long Island and elsewhere. And they’re moving ahead despite a big budget gap.

“Many of the projects were already ongoing. Our three- to five-year plan is moving forward very well,” Cort said. “Whether we’ll be able to put new, independent, second-tier programs in place, we’ll have to see.”

SCO Family of Services, based in Glen Cove, is opening two residential schools, including the Christopher School, a facility in the Bronx for 36 primarily lower-functioning autistic children. And it’s seeking a Long Island site for Westbrook Preparatory school for another 36 higher-functioning children. The group already operates a facility in Seacliff, serving 73 children, including two-thirds who are autistic.

“The good news is between the two schools we’re opening, there will be 72 children who are no longer out of state,” said Moran. “We’ll be spending the money in New York state. The families will be able to be close and see their children more frequently.”

Andresen, whose son remains at an out-of-state facility, said she and her school district are working to place her son in a program opening on Long Island.

“They did everything possible to help and accommodate him,” Andresen said. “They’re working with me now to bring him back.”

Cort sees a light at the end of the tunnel, although that doesn’t mean all students will be in state. “I doubt we’ll get down to zero,” she said. “There are some unique students. It’s also a matter of unpredictability of need.”

Autistic students at in-state facilities

Year Number
2005-2006 1,210
2006-2007 1,371
2007-2008 1,514

Source: New York State Department of Education

The boy behind the law

Although New York state sends children with disabilities to out-of-state schools, the state must engage in at least some supervision beyond its borders, thanks to legislation known as “Billy’s law.”

The law is named for Vito Albanese Jr., also known as Billy, who was sent to out-of-state facilities for many years.

“New York could not properly educate him within the system of New York,” his father Vito Albanese Sr. said. “They searched the whole state to see if they could find him placement. It was inadequate for his needs.”

After his son told him over the phone he had been hurt, Albanese drove to the facility where his son lived and then got a doctor’s report.

“The doctor said his rib cartilage was separated,” Albanese said. “Once [the New York State Department of Education] got a hold of the doctor’s letter, they did an inspection and interviewed people.”

The state passed Billy’s Law in 2005 in honor of Albanese’s son, requiring the state to inspect out-of-state facilities, but not specifying a schedule. New Jersey in January passed its own version of Billy’s Law, requiring inspection every three years.

While Albanese hopes one day children won’t be sent out of state for care, he worries things aren’t improving as fast as he’d like.

“As far as I can see, the intention of Billy’s Law was to keep children within New York state,” Albanese said. “I don’t see that really being done. I don’t think they have the will to do it.”

2 comments

My daughter is currently in a instate school, but the facility is dirty and she has lost proper hygeine that she learned at home. I recently received a call from the dentist that the school goes to about her deteriorating teeth. So sometimes nearer is not necessarily better. I think we have to weigh our pros and cons

About the Author

Claude Solnik covers healthcare, finance, and technology/energy for Long Island Business News.